Transitioning from a Regular Life to one with an Invisible Illness

Category Archives: Spirituality

I haven’t been blogging for the past month, even though I enjoy writing more than I ever realized. My career, when I was employed, was working with computers and financial statements. Numbers are cut and dry and programming and designing databases, require a logical forward thinking approach. I had a successful career and this vocation seemed to suit the way my mind worked, or so I thought.

Now after being out of work and on disability 4 years ago to the day, I realize that even if I were to return to work, what I did for 28 years is not what I would choose to do now. My nephew is starting law school in the fall and is so passionate and excited about being a lawyer. I was never excited or passionate about being a financial analyst. It was just the logical thing to do after I received my MBA in finance. I didn’t even interview for any other types of jobs and now I wonder why. Why was I so focused on the analytic career path? And once I landed a job, the career seemed to form itself and then an opportunity opened up for me to start designing databases and I started doing that and enjoyed it.

I was very content in my career. I had 3 jobs over a 28 year career and 1 of those jobs was only for 11 months, so basically I spent 27 years with 2 companies. I must have been content otherwise I would have made different choices. I felt challenged, loved my work family and was very nicely compensated. Maybe that’s why I didn’t even think of doing something else. Most people have to reinvent themselves when they are challenged to do so, just as I have been since I became ill.

Writing has been a very different kind of enjoyment. Writing is personal, writing is subjective, writing is relaxing and writing is solitude. So why haven’t I been writing lately. I’m really not sure. I know I’ve been in my own head much of the time over the past month, trying to figure out ways to learn new things, meet new people and start enjoying life as I have to live it.

There are many paths people can choose when faced with a difficult life situation and I know I have handled mine with grace and dignity. No one can take that away from me. Maybe now it’s time to try and add in a little fun too!

This past weekend, was Yom Kippur, which is a solemn, reflective day to all Jewish people. Everyone thinks back over the past year and reflects on things that have happened, people that have passed and the deeds they have done.

On this holiday, it is believed, everyone’s fate is sealed for the next year. We atone for our sins today and tomorrow we start the new year with a clean slate. It’s a new beginning, with new possibilities for us all. In the spirit of the holiday, I have forgiven someone close to me who has hurt me tremendously, on several occasions.

I have been carrying around this hurt and annoyance and it was weighing me down. I decided that forgivenss was the kindest gift I could give myself to lift my spirit and I also felt it was a gift to the person I was forgiving. The person was very appreciative and apologized for the hurt and said that for me to forgive them, really shows that I am a special and understanding person.

It felt good to forgive someone, really forgive someone for something big. We are always forgiving people for running 10 minutes late or for misunderstanding something we said or forgetting to wish us “Good Luck” on an important occasion. These are little things, that in the scheme of life are unimportant. But I felt like it was a cleansing to forgive on a greater scale. Forgiveness brought me peace of mind. So for now, I have let go of the deeply held negative feelings I had towards this person, but time will tell if positive ones will replace these newly released negative ones.

Forgiveness does not mean that I am forgetting what was done, nor does it mean I’m excusing the offenses. It means that I am no longer holding on to this negativity and that I am free to move forward into the new year with a truly clean slate.

One night, after I finished eating dinner, I was bored and lonely and decided to call my boyfriend. We had been going out over a year, but during this time period I went from being a healthy independent career woman to someone with an invisible illness that had sucked the life and energy out of me. My relationship was strained as a result of becoming sick, as my boyfriend was uncomfortable being around old and sick people. I knew this before I became ill, but at that time it really wasn’t an issue.

It was a Wednesday night and usually we tried to see each other once during the week and then we spent the weekend together at his house. I was isolated living in NYC with my illness and he really was my lifeline. He’d pick me up on Fridays and drop me back home after the weekend, as at this point I was working from home, trying to sort out my health situation.

We had settled into a routine, although neither one of us was all that happy with our situation at this moment. He wanted more from me and I really had no more to give. I was like a battery on it’s last charge, puttering a little, but not completely dead. We had bickered a lot during the previous weekend because he didn’t want me to go home on Sunday and I said that I have no more to give, I’m completely exhausted and bone tired. If you need more, then you probably should start dating. He had said much worse to me and in a tone, that I became all too familiar with.

So on this Wednesday night, as I picked up the phone to speak with him, I wanted to smooth things out and figure out a way to avoid having the same situation occur the next weekend. But to my surprise, when I dialed his cell number, I heard him pick up and I said, “Hello”, but he wasn’t on the other end of the phone. Instead, what did I hear… I heard him talking to another girl, yes he was on a blind date, with someone for the first time.

At first I couldn’t believe what I heard, I was in disbelief. I didn’t know if I was more shocked that he was on a date, or that somehow the Universe was letting me know he was on the date and letting me listen in. I heard all about her, that she was a widow, with 2 grown kids and that her parents recently died.

I heard him suggest his favorite Italian entree and I immediately knew what restaurant he had choosen. We had been there many times together and I was picturing him sitting there with this woman. I heard him describe his situation, his children, his ex wife, his job and I felt like an intruder, yet I just couldn’t hang up the phone. I was in shock. How could he find someone to date in 2 quick days. Was he dating all along, since I became ill? Would I ever know the truth or be able to trust him again completely?

I feel that you should never ask a question that you won’t believe the answer too. So my mind was racing, was I going to ask him about this date?, was I going to pretend I didn’t know? or was he going to own up and tell me that he went on a date?

At this point, 2 hours had probably gone by and I had my headphones on. Yes, I probably should have hung up, but I couldn’t. The dinner was coming to an end and he paid the bill and they exchanged pleasantries outside the restaurant. Was he going to kiss her? Well he didn’t, instead the conversation switched and they started talking about cell phones. And what does he do, he reached into his pocket to show her his new cell phone and he sees that he’s connected to me on the phone.. OMG, I panicked and quickly hung up.

Now thinking back while writing this post, I’m laughing and have a big smile on my face, but at the time I wasn’t laughing or smiling. I knew he would start calling me when he was alone and I really didn’t know if I was prepared to speak to him right now. Sure enough 15 minutes later, the phone starts ringing and I don’t pick up. His personality, is such, that he won’t stop calling until I answer, he had displayed this behavior before, so I gave in and gave it to him!! We had an argument and then I hung up the phone and tried to sleep, but I didn’t sleep.

I couldn’t shut my mind off. I was hurt, very hurt, that 2 days after I told him to start dating if he needed more, he did. Really what hurt me the most, is that I realized he must have been planning on dating way before the past weekend when we bickered a lot and he had this girl waiting in the wings.

The next day, he showed up at my door and apologized profusely, over and over again. There was no connection between them, he doesn’t want to see her again and he wants to be with me, even though I’m ill. It took me a while to get over the hurt, but I did forgive him and we did give it another try.

What happened that night, has always stayed with me, as one of the funnier situations that have occurred in my “off the wall” dating life. I have many of these stories, but this one is close to the top of that list. Maybe the one that’s at the top is when I was on a blind date myself, after the meal, I had to go to the rest room and when I came back to the table, my date was gone. He left the restaurant. Unfortunately (or maybe fortunately), I don’t remember what we talked about, or else I could have used that story for my post!

Shortly before this course started, I posted a blog about 4 incredible women that I have met in the years since I’ve been ill, but I don’t want to talk about them today. Today I want to describe a man that has touched my heart and my life in ways that no one else has and probably never will. He isn’t my boyfriend or my husband or my partner, but he is my truest friend that I could ever wish for.

I met this man close to 20 years ago when we both worked for the same company and we have both changed a lot since then. I remember being intimidated by his stature at first, because he was an ex navy officier, who stood up straight, walked with a steady and deliberate gait (even in his cowboy boots) and had the biggest belt buckle I have ever seen. His thinning hair was covered by a 10 gallon cowboy hat and his silver trimmed glasses highlighted his kind eyes. Beneath all of these clothes was a man who exuded positivity, warmth and love.

When he walks into a room, he commands respect, but not in a snobbish, pretentious way. You just sense that this man has something important to say and that being around him will make you feel good. He speaks in a calm and gentle tone and in all the years we’ve been friends, maybe he’s raised his voice once. When he speaks to you, you believe in him and in what he has to say.

He is a protector of people and I have been protected by him in many ways, both on the job and in my personal life. Since I’ve been ill, he has come to my rescue on so many occasions that it’s hard to recall them all, but he was the one that took me to my disability hearings so that I wouldn’t have to go through it alone. When I had to stop working and go on disability, he bought me an ipad, so that I could keep myself occupied and during the first holiday season that I was sick, he came and picked me up and drove me around NYC so that I could see the holiday decorations. When I had to move because of my illness, he handled the movers and made sure my apartment was empty and clean. He makes me feel safe whenever I am near him and he doesn’t even have to do anything but be himself.

But he doesn’t only protect his loved ones, he was the last man out on our floor when our office buildings were evacuated on 9/11. He made sure everyone else got to safety before he left the building and then he made sure to secure our computer and data systems, so that our company would be protected from downtime and data loss.

His approach to life, when I first met him was very foreign and strange to me, but as time went on, I began to start to see life as he did. He was an example of the “law of positive attraction” and he taught me to ask the universe for things and to change my thought process.

Although I am still working on this, as it doesn’t seem to come easily to me, to him, it’s second nature and there is no other way. He never seems to worry about little things, such as checking the bus or train schedule. He believes whenever he gets to the station, there will be a train waiting for him. He never worries about finding parking spots because they always open up when he drives on a block. He never worries about how much things cost because he believes everything will even out in the end. He is generous to a fault, to the people that matter to him and I am lucky enough to be included in that group.

This man is one of a kind, and I thank my lucky stars ever night that he walked into my life that day. When he greets you, he encompasses your body with a big warm bear hug or when he calls you on the phone and says “Morning” in his southern drawl, you know things will always be alright as long as you have him on your side and in your corner.

Today is the anniversary of one of the most horrible tragedies our nation has suffered and hopefully the worst that I will have to witness in my lifetime. It’s almost unimaginable to think that 13 years have gone by since that cool, crisp September morning when NYC was under attack and I had to run for cover. Thankfully, back then, I was healthy and could run and walk on my own. I often wonder what would have happened to me that morning if I had to rely on the kindness of others to protect me.

Many people were saved that morning because of the help of fire fighters, ambulance workers, police men and just plain old every day goodhearted citizens, but thousands of others weren’t so lucky and many of the ones that didn’t perish that morning were damaged emotionally in ways that others can’t even imagine.

I won’t relive that morning, as I did it in my post on my blog a year ago, but I still felt it needed mention. As a result of that day, many, many, many people’s lives were effected and unfortunately changed for the worse. I know 2 people who worked in the towers and managed to escape and I know 1 person who was downtown that morning working in another building, and like me had to run for cover. This last person is the one who emotionally has suffered the most and since that day, has never been the same.

Why is it that she has suffered the worst, when she hadn’t worked in the WTC. We all saw horrific things that morning if we were by the Towers, but why is it that some of us have recovered emotionally and others haven’t. To me this has to do with our mindset as we approached the day.

After witnessing the horrible events of that day, we all were in shock, and it took all of us time to process what had happened, to grieve for the people who lost there lives and the ones that lost their loved ones and then to heal. But some people don’t heal, why?

Since 9-11, we’ve learned a lot about the brain and about suffering. Trauma disrupts the balance of feeling, memory and decision-making in our brain and all these parts need time and care to come back into balance. Research has shown that even in the face of unimaginable tragedy and despite the fact that we will always remember what happened, emotional balance for many victims can return to normal within 2 years. This is a great cause for hope. But what about the people whose brains don’t return to normal within 2 years, is there still hope for them? We’ve also learned over the course of the last 13 years that Post-Traumatic Stress Disorder, or PTSD, affects not just the immediate victims of violence, but also bystanders and witnesses.

In order to heal and recover, we must face our inner wounds and choose to fight them. The alternative is to deny them, but then our suffering will continue and the healing process will be delayed.

My friend is working very hard to fight her inner wounds, but they are very deep and very severe, and unfortunately after 13 years, they are still there. She has been crying since yesterday for the life she lost and for the person that never returned home from work the same. I hope she is able to slay her demons (or at least tame them) this year and that the next time 9-11 rolls around on the calendar, it doesn’t have such a hold on her.

We have just passed the sad anniversary of when I went out on Disability. I have been thinking about the 4 years since that happened and what has occurred in my life. And what has stood out to me, has been the stand out and stand up Women I have met in this time. I have met 4 women, through the course of my new journey that are Powerful, Grateful, Kind and Loving all in different ways, but all in ways that reach out to you.

3 of these women, I am proud to call my friend. The 4th is a recent addition to my world, but she is unlike anybody I have ever met, as she is a Nun, who is also a Licensed Massage Therapist. I went for a massage yesterday and also received a blessing as she prays at the beginning and end of the session. I am not religious and not even Catholic, but yesterday I felt the presence of God during the session. I so wish this woman was my grandmother, as she has spunk beyond her years and a twinkle in her eye.

All these women have their own life stories to tell, filled with their own trials and tribulations, yet all show up every single day with a welcoming smile on their face and are just grateful to be here another day. Another one of these woman is a Reiki Healer and being with her is like transcending time. When you are with her, an inexplicable peace just fills your body and you feel calm and relaxed. There is an energy emitted by this woman and it too envelopes you beyond which any words can describe.

The last 2 women, are either struggling with their own illness, or the illness of a close loved one, yet they are grateful and appreciative for everything good thing in their life and try not to dwell or drown with the bad part.

I am so eternally grateful that my illness has brought these 4 Amazing Women to me. They are role models and mentors in many ways and I hope they all know how much their friendship means to me. I think about how they struggle, yet always sound cheery when we speak and never complain about these troubles, just talk about them as part of their life.

When you are struggling with a chronic illness or dealing with a chronic illness the illness creates your “new normal”, in such that now it is part of your new life and going back to your old life is not even possible. Right now all I can do is accept my “new normal” and be thankful that I have these “new friends” to share them with.

Today it was pointed out to me by someone who’s opinion I trust and respect, that I very rarely get angry. This wasn’t the first time this was pointed out to me and I wanted to explore this further. I said anger is an emotion I am not comfortable with. I hate the emotion when it is displayed in others and especially when it’s directed at me. I try very hard to live and act a certain way, so as not to hurt or anger anyone. My intent is always pure and I expect others to act the same way.

But is it healthy not to get angry? Can’t I be pure and good and nice and still display anger. Am I harming myself by not getting angry when it is warranted? Shouldn’t I be angry that I am chronically ill and have no idea when (or if) I will ever return to health? Shouldn’t I be angry that I had to stop working and go on disability? Shouldn’t I be angry that I had to sell my co-op that I owned for 20 years and move to a neighborhood near my mom and sister, so that I had a support system near by. Shouldn’t I be angry that I have been removed from society for 5 years and not able to move on with my live?

When I read this, I’m thinking of course I should be angry, but I’m not. Or is this anger so suppressed and buried deep within me, that it is keeping me ill and I don’t even know it. It would be a lie to say that my life and my health haven’t changed for the worse, but I think I am making the best of a difficult situation and I just don’t see how being angry that this happened to me is of any use.

I grieved for the loss of my pre-illness life, as I would a loved one. In fact, I was going through this period of mourning my old life, when my dad past, so I grieved for them both at the same time. Just as I deeply miss my dad, I deeply miss the life I had, but as time moves on and you become more removed from the past, the new normal is your reality. While I remember and have flashbacks of my dad when I see a mailman on the street (as that was his occupation), or when I have to parallel park (as he taught me how to expertly do that), I also have flashbacks and pangs of sadness when I think back to my working and dating days. But not anger, never anger or rage.

I’m starting to wonder if this is normal. I never really thought about it before like this. What good is constantly reliving the past in our minds, it only holds us back from moving forward. I have so many physical constraints, I don’t want to think that my mind is causing me to prolong my illness and recovery.

I strongly believe that a very important component of me getting well and feeling better is adapting to my new reality. Even though my life is difficult, very difficult at times, I still have an inner peace that sustains me and helps me go on each day. There are days when I feel useless and not productive, but I never feel like my life is without value or worth.

My particular chronic illness is an extremely physically draining one, but I would be foolish to think that it isn’t emotionally draining too. The more I adapt to my current surroundings and my new limits, the happier I feel I will be. I am very thankful, that before I became ill, I was a very resilient, easy going individual and this resilience has served me well. I also am thankful that I have a social support system that is available to me when I speak up and ask for help.

So as suggested to me, for the next 30 days, I am going to keep a diary of situations that occur and my response to them and see if anger is warranted in any of the situations when I review the day in my diary. I am hoping I don’t have too many entries!